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    #221138 08/21/15 02:07 PM
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    EmmaL Offline OP
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    Last edited by EmmaL; 06/24/16 09:21 PM.
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    EmmaL, sending strength and good thoughts! Getting assessment results can be overwhelming, and it sounds like you've been hit with quite a list. Take a deep breath, and start by recognizing you now have some really important knowledge in your hands. It may be hard to see where you are going, but you can feel confident you are now able to take steps in the right direction.

    It sounds like your son has had a challenging time, and there may be a lot of negativity and anxiety to undo. I would suggest a first step is for you and him, and then his teachers, to recognize that he is absolutely NOT "bad, lazy, stupid, careless, oppositional, etc" - but he probably now thinks he is. Undoing that self-image, and teacher view, is difficult but essential. Tell yourself, him and his school, over and over if necessary, that it's not that he WON'T, it's that he CAN'T. Yet. This perspective shift alone can be life changing.

    You will undoubtedly have a long and growing to do list coming out of the assessment, and I know how very hard it is to figure out where to start. My suggestion is look for two things as your first priorities: quick and easy wins, and what's the biggest pain.

    Easy wins: Immediate accommodations to vastly reduce the volume of written output, including anything from answering no more answers than necessary to show competence, to alternative forms of demonstrating knowledge (posters, presentations, etc), to keyboarding everything possible, with word recognition and voice recognition software. (Next steps, a bit more challenging to obtain but hugely helpful, are oral checking of knowledge (rather than writing out answers), and scribing for him, as much as possible.) Provide audio versions of anything he is supposed to read whenever possible, and use text-to-voice to help access written materials. Most of these accommodations require little teacher time or resources, just flexibility, and can be implemented immediately. (We simply bought a cheap laptop, loaded it up, and put it in our DS's classroom. Three years later, he's finally on the list for a school-provided one - just on time to move our laptop into his younger sister's class.)

    Max pain: What challenge is causing the most misery in the classroom, making it hardest to function on a daily basis, and probably contributing the most to his anxiety? I don't know how the language issues are impacting him, so they may be top priority, but from your list I would guess reading is the largest pain point. In terms of investing time and money in remediation - as opposed to accommodations like above - I suspect reading may be the best place to start. You'll need to find the best way to access an Orton-Gillingham based reading program for him, (probably not for less than an hour a day, five days a week). There are likely people on the board who can recommend specific resources in your area if your school can't provide. There are also home-based programs like All About Reading (www.allaboutlearningpress.com/all-about-reading/).

    In my own experience, there is nothing like undiagnosed learning disabilities to create poor behaviour and functioning in a classroom. In my DDs case, stress comes out as anger and unpleasantness, and the greater her fear, the harder she pushes away those trying to help her. First, just getting her diagnosed (dyslexia and a handful of other things) was a huge relief for her: she's not stupid, and she's not incapable of doing what everyone around her is doing, increasingly effortlessly. She just needs to be taught *differently*. Revelation. Second, starting reading remediation, she could see clear and undeniable progress in a month or two, and realized she really *does* learn well - when taught the way she needs. Her teachers began describing in shocked voices this completely different child who skipped into class, smiled, engaged, took risks, shared her progress and approaches with her classmates, and sang happily to herself while she worked. They had no idea the sullen, grumpy girl they had been dealing with was so very NOT my child.

    Anxiety et al will likely need some dedicated support and help to build better coping skills and un-learn the negativity your DS has undoubtedly built up - but you may be amazed at the change a little self-confidence can bring too. If your child has been working as hard as he can, and struggling painfully and inexplicably to do things that seem automatic and easy for his classmates, and yet STILL got called lazy and oppositional, argh. Poor thing. Of course he's poorly adjusted, anxious and depressed! Who wouldn't be?

    Ten months out from our DD's initial diagnosis, I sometimes still find it pretty overwhelming. We still have a long list of challenges, remediation and outstanding questions for both our kids. We're still adding to our diagnoses and the to do list they imply. But we're slowly working through it. And we can see the changes, the more confident, capable, happy kid. And the absolutely most overwhelming feeling of all those I have these days is being bowled over with joy when she takes my hand, and says, Mommy, can I read this to you instead of you reading to me?

    You'll get there, honest. You're on the way and you're in the right place.


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    If your husband is insisting on a private school, religious or not, you may be facing an uphill battle getting the necessary services. If you are in the USA your local school district is obligated under federal law to provide a free and appropriate public education (FAPE) under the Individuals with Disabilities Education Act (IDEA). Private and parochial schools are not. Child find obligates the local school district to identify children who need disability services but they may or may not provide those services if your child is not enrolled in the public school. Some districts make the process easier and/or are better at providing the needed services than others. Your first step should probably be to contact the director of special Ed in your local district and see what they say about starting the IEP process regardless of whether you enroll him in public or not.

    My DD10 attended kindergarten at a regional magnet in the neighboring large city. It was an awful, awful experience. I had suspected fine motor and hand/eye issues from the age of 18 months, dyslexia from the age of 4. All anyone saw was the sparkling brilliance, though, so it was very difficult to get referrals for evaluations or services. The district where the magnet was located would not do anything - they just kept repeating "she'll never qualify for services she's too smart." Finally at the end of the year I contacted my home district and they did testing to find results similar to your DS.

    We wanted to enroll her in a lovely little private school that we were sure would contain the anxiety. My school district talked us out of it saying she *had* to be in a a public school in order to get all her needs met. They explained FAPE, IDEA, LRE, child find, etc. If the private were located within the area my district serves they would be able to oversee her program and offer limited services. (ie up to 45 minutes per week reading intervention as opposed to the 2.5 hours she would receive at the public.) The private was located in the same city where DD had done kindergarten so it was clear they would not provide any services to a non-resident attending a private school within their borders, We would be financially responsible for all services and devices she may need if we did not place her in the public. Once our total got to be $50k for first grade (and still counting) we realized private was not going to be a viable option. She is now in an out of district placement at a special Ed school and I estimate her yearly expenses to be in the $80k - $100k range. There is no way a typical family could undertake this. Even with good insurance and good income it would be unreasonable to expect to do this year in and year out.

    So in term of where you start - assuming you are in the USA - call your school district Monday morning and ask to speak with the director of special Ed. It's a tough time of year because all the back to school IEP and 504 meetings will be happening the first weeks of the new school year. Meet with them, show them the neuropsych eval and ask for direction. You will likely be needing OT, speech and reading interventions to start. You will also need to start looking for a private therapist. The public would probably provide counseling with a school psych or social worker but with the kind of trauma your DS has likely endured you need to find someone who is experienced with 2E/ school anxiety issues. (We got lucky and found someone who specialized in school phobia and was a 2E adult and the parent of a 2E kid. She even took our insurance. Not everyone is that lucky.)

    Then get very, very familiar with Wrightslaw. There is a steep learning curve on all of this and you will feel overwhelmed. Everyone does. Just keep reading and learn as much as you can. Maybe bring in an outside advocate to help you figure it all out. On Amazon you can buy 3 of the Wrights' books bundled together that will explain special Ed law, IEP's and how to advocate. They would probably be money well spent.

    But really - if your husband insists on keeping your son at the religious private this is probably going to be very difficult. Meet with them too and show them the report. They may have at least some of the services available even if you have to pay extra for them. They may tell you that they can't meet his needs for the reasons outlined above. If they dismiss the report or continue with the negative labels that would tell me that he *can't* be successful there.

    And keep coming here and asking questions. Chances are pretty good that someone here has been through whatever challenge you will be facing. Even if you just need to vent we are here. It's hard to find people in real life who will understand so luckily we have each other on this forum.

    Good luck!

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    Wow EmmaL I feel for you - that does complicate things. I would still probably start with the public school district. Get an IEP drafted that shows the level of service they would provide if he were in public school. How do you know they would agree to out of district placement at one of these other schools? That could be powerful if it can be documented.

    Once you have the input from the district I would meet with the religious private. Swallow hard and don't expect them to roll out the red carpet for you but meet with them and hear what they have to say. (My understanding is that while he may have "final say" for education you are not excluded from the discussion, just as he would be free to speak with doctors even though you have final say on medical issues.) Show them the reports and the new IEP. Explain that your ex seemed to misinterpret the prior report to mean "lazy" and "underachieving" rather than "disabled". Hear them out on their interpretation. How do they justify a 6th grader in their school reading at a 3rd grade level. My guess is they will jump at the idea of dyslexia over ineffective teaching but YMMV. Ask them what level of service they "can" provide and what level of service they "will" provide. If they can't provide the level of service the public puts into his IEP be sure to understand why. Is it something out of their control or do they disagree with the need or has no one ever asked before. If you can get the school to understand you may have a powerful partner in getting the ex on board enough to get proper services for your DS.

    If needed have a meeting with the school and the evaluator and your ex afterwards so all are on the same page. The evaluator should hopefully be skilled at explaining the situation to your ex. S/he can also explain to the school or combine with the school to explain to your ex. It may be that the school will be responsive and find a way to meet your DS's needs. Or it may be that you get a whole lot of documentation to bring back with you to the family court. Assuming your concerns were confirmed with this last round of testing and you had to fight in court to get it done you will likely have credibility on your side if you ask for the court to intervene based on this new info.

    Good luck. And please keep us posted on your progress!

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    EmmaL, what a challenging situation! Just sending support, and hoping the next discussions go well.

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    Emmal, First, I'm sorry about your situation. It sounds like a frustrating situation all the way around.

    I also have twins and one of them has dyslexia. The thing that helped him the most was knowing that he had dyslexia and wasn't dumb. We never said dyslexia was a disability, instead we told him we found out he learned differently, which was why he had a hard time with the way other kids were taught. Just knowing that he could learn but needed to be taught differently changed his outlook on school and learning. (At the time, he had started to hate school and was emotional anytime he had to practice reading.) So I hope you tell your son that it's not HIM that's having the trouble-- it's that his teachers didn't realize he needed to be taught differently.

    I agree with Pemberly's advice on meeting with the school. The only caution I would have is to make sure he gets remediation for his reading and writing in addition to accommodations for his dyslexia/dysgraphia. He still needs to become a better reader and sometimes it's easier for schools to just accommodate and get out of the responsibility of teaching.

    Separately, while you're waiting for the long process to unfold, can you start getting your son tutoring while he's with you? He's got a lot of ground to make up and the sooner he gets help, the better off he'll be.

    Last edited by syoblrig; 08/27/15 08:18 AM.
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    In terms of what you can do yourself, now: In a large city, I would expect you could find specialized tutoring (e.g. Lindamood Bell, Barton, Wilson), which lots of people on the board could speak to. I think the general conclusion is very expensive but effective.

    An alternative, if you think you might have the capacity to start some reading remediation at home, is using a scripted program to teach your DS yourself.

    We are using "All About Reading" (www.allaboutlearningpress.com/all-about-reading/) with DD8 (going into grade 4). She was diagnosed with dyslexia last fall, and AAR is working miracles with her reading. Like syoblrig's DS, my DD found her diagnosis a huge relief. We too emphasized that she was very capable of learning, she just needed to be taught differently. We started AAR because wheels were grinding excruciatingly slowly, and I needed to be able to do something for her now. The program is really easy to use, and we could see early results fast. This has been crucial for proving to her how well she can learn when she is taught the way she needs, and in keeping her willing (if barely somedays crazy) to keep at it.

    My caveat with this particular program is only that you are dealing with an older and male child. While it's excruciating keeping DD at it, the themed activities and stories do at least appeal to her: she's quite whimsical and loves animals. The program is a good match for her. I have to be honest though, I have often given thanks that its not DS11 - very techie, hates animal stories, not an ounce of whimsy in him - that has to do this program; that would be very, very painful. So depending on his tastes and temperament, an older child might be fine with AAR, or he might prefer a different program that doesn't even try to be cute and fun. I've seen older reccomendations for Toe by Toe on this board, for example. However, I do get the sense it's less "multi-sensory", and a much less comprehensive approach to reading as a whole: hopefully others on this board could chime in with more direct experience.

    Don't hesitate to keep asking questions. Supporting our 2E children is exhausting and lonely at the best of times, even with two parents working together. You are an incredibly strong and caring mother to be managing so much under such difficult circumstances. The knowledge, experience and support of the people on this board can really help you feel like you have a great team at your back.

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    Another OG-inspired scripted curriculum that is a less cutesy alternative to AAR is Logic of English (https://www.logicofenglish.com/essentials). It combines reading and spelling (which has pluses and minuses), and doesn't go as far with regard to decoding using word roots and words borrowed from other languages, but is still a good option, though I think I would probably make some modifications for a dysgraphic kid, because of the spelling component. This was designed originally for remediating older dyslexics.


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    EmmaL Offline OP
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    I met with the Special Ed Director of DS11 private school. I am having many “lightbulb” and/or “duh” moments. While I haven't perfected my tone, I have learned to take emotion-anger-anxiety-passion out of my voice.

    Giving me a sense of calm I was able to redirect most of the meeting, acting like a nice political TV pundit, no matter how frustrating or painful it was. The school likes to add a lot of “filler” to eat up meeting time. I ended up saving time with “thank you, but we can save time by moving on from reading the IEP teacher goals.” The Director is great at answering the same question five different evasive ways. Answers to “how long did you speak to the neuropsych evaluator” ranged from a “long conversation,” “nice conversation” and “in-depth conversation” to “I listened to her recommendations” to “ I didn't time it.” When I pressed that I didn't know what all that meant and “was that 5 or 45 minutes?” The answers were “somewhere in between” and finally “20 minutes.” It felt like I was pinning Jello to the wall. I continued with “I know you only have 10 minutes left and I have 10 more questions” when the answers became generalized, off-topic and long.

    I really had to control myself on false statements such as “DS11 four diagnoses are not new” and “DS11 needs to improve his comprehension and his writing.  We will continue to support him as usual and look forward to his continued progress and a successful year.” The language disorder is the same. Dyslexia and dysgraphia are new. Emotional was removed from adjustment disorder anxiety with depressed mood. DS11 can now sit in his seat and not faceplant in frustration. I didn't seemingly bang my head on “well you suspected dyslexia.”

    Not surprisingly, I received a lot of denial and opposition from the negative labels that DS11 was feeling and internalizing. Answer's ranged from “that's not the feeling I get from DS11 at all” to “oh no, DS11 knows we are here to support and help him” to I explained (instead of blamed) “this is the way DS11 feels.”

    While I have excluded a lot of the mid-meeting, I ended the meeting with that it was nothing personal, but that I didn't feel that the school's environment was right for DS11. I expected them to still work with me despite my continued request that Family Court allow me to move him to a different school, such as a DOE paid $65,000 private 2e school (help!) “DS11 was on grade level in 1st grade and he has continued to deteriorate under your tutelage. DS11 has not advance passed 3rd grade reading level. Family court has ruled twice that the school must have the same communication with me as ex-DH. I don't want to see you pulled into Family Court.” I tried my best to give a calming smile. The Director questioned if I was getting “medical help for DS11” for when I stated that “DS11's impairments are medical disabilities.” I flatly responded that special education is “medical help.” Even the IRS allows medical deductions for Special Education tuition.

    I wasn't baited to lose my composure or get snarky during the meeting. It all seems so basic and I really need to thank my Family Court Judge for that. I do not always agree with the Judge's responses and decisions, but I do admire the way she intelligently responds without bite, snark and/or emotion.

    So... here I am. I am waiting for the next Family Court date and the written (final) neuropsych results and recommendation that are supposedly in the mail. I do need to follow up with what if anything that the school, OT, counselor and speech therapist plan on doing to change course. I guess that I wasn't that great for redirecting the meeting. It's very therapeutic to write all this down.

    Off topic question... The T-Mobile iPhone 6s offer is a great deal for me. I'm thinking that it would be a great incentive and gadget for DS11, such as listening to audio books while he follows the Kindle book and other impairment accommodations, especially when commuting to and fro school. Does anyone use a smartphone to accommodate their DS or DD? Please share.

    ETA: remove repetition, because I stink at proofreading.

    Last edited by EmmaL; 09/11/15 04:57 PM.
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    Whoa--I thought my situation was difficult, but my children's father is just uninvolved, not adversarial.

    I don't have any smart advice for you, but it sounds like you were on your game in that meeting. Well done!

    Smart phone: we are using smart phones now, an "accommodation" in that I can text the kids reminders (one of my DC is terribly forgetful). I do think that can be a great incentive for kids at this age. Mine love electronics and are very receptive to anything in this format. A caution: this can be yet another thing to battle over with the kids. I'd think it through carefully and discuss rules and expectations with your DS so that it doesn't become a problem.

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